HCU Network America, Organic Acidemia Association, and Propionic Acidemia Foundation's "LAND OF THE FREE, HOME OF THE BRAVE" 2021 Conference June 2022 The Land of the Free, Home of the…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
CAR T Cell Therapy in MDS/AML October 16, 2021 Speaker: David A. Sallman, MD, Moffitt Cancer Center This informational webinar will focus on a treatment approach called CAR T-cell therapy,…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Interpretation of Variants in SYNGAP1 August 19, 2021 with Eduardo Pérez Palma, PhD This webinar will feature a discussion of research related to genetic variants in SYNGAP1. Click here to…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
Outcomes for High-Risk MDS Patients Undergoing Transplant vs. Standard Non-Transplant Therapies August 7, 2021 Speaker: Erica D. Warlick, MD, University of Minnesota Medical Center This free webinar provides an overview…
About a month ago, from June 23-26, The Immune Deficiency Foundation hosted the 2021 Primary Immunodeficiency Conference. The event was the largest gathering of primary immunodeficiency (PI) patients across the…
Que son los sindromes mielodisplasicos? Guillermo Montalbán Bravo, MD, MD Anderson Cancer Center Este seminario les va a proveer como se determina el diagnóstico de MDS, se estará enfocando en…
The 9th International Symposium on Alagille Syndrome "The Alagille Trail" July 16-17, 2021 The Alagille Syndrome Alliance is Discovering New Paths and Leaving No Stone Unturned at their 9th annual…
The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
July 13th 2021 will be recognized as GIST Awareness Day. This is a day set aside to help spread awareness about gastrointestinal stromal tumor (GIST), a rare disease, among the…
Do you love golfing? Interested in making a difference for patients with amyotrophic lateral sclerosis (ALS)? If you're located in or around Oceanside, CA, then I have an event…
2021 GRIN2B Family Weekend July 9-10, 2021 This event is open to patients and families affected by GRIN2b-related neurodevelopmental disorder and related diseases. The weekend will be focused on building…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
RAREsummit21 October 7, 2021 CRDN's RAREsummit21 is designed as a platform for change. This is an opportunity to hear from and engage with the stakeholders that are creating change across…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
Twin Talks Webinars: Twin Anemia Polycythemia Sequence 101 June 29, 2021 This webinar will be focused on answering any questions that the audience wants to know about twin anemia polycythemia…
The 2021 Living Rare, Living Stronger Patient and Family Interactive Virtual Forum Featuring the Rare Impact Awards June 26-28, 2021 This forum is specifically geared to be a patient-centric event.…
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